Hi I am a 59 year old female who is an Addisonian... type 2 diabetic with Fibro and everything else related to CFS etc etc etc .
Question if I may I am having trouble with my left side from head /neck spasms right down to my leg ....left side.
It all started with a spasm in my back approx 6 years ago that stayed for 5 weeks .. excruciating . Then after a little while of that coming and going . I had incredible cramp in my left calf . I thought I would try to walk it off. I stepped out of my front door and my calf went off with an almighty crack. So loud that my hubby heared it from inside the house. I had an ambo ride to hospital and was told I had torn the muscle severely. Well onwards... the muscle cramps / spasms were worsening and very debilitating . Still are to this day.
I got diagnosed also( during an Adrenal crisis) after Being Tested over s long time bloods daycurve for my Cortisol levels . Diagnosed ... I have Secondary Adrenal insufficiency... AddisonscDisease ..I take Cortisol have done now for 4 years.
Many crisis and hospitalisations. I have learned how to control my symptoms of Cortisol highs and lows ..
The spasms are however worsening, so my Question is I guess .. what? if anybody has any ideas on this .. my left side so painfully stiff sore now also Arthritic, I have to use a an electric wheelchair instead of my gawjus motorbike.
Ate these spasms anything that can be to do with anything anyone could elaborate on .. ie Addison related , Fibromyalgia sometimes my body is too fatigued to even leave my bed. I am at my wit's end as noone has any answeres for me .
Anyone have any ideas of tests I could ask for . I've seen neurologist who said that I have too much.pain in capsule shoulder that she couldn't tell anything for certain.
I also have urgent bowel/ bladder incontinence.
Basically...
HELP please!
Cheers guys am sorry about tge book ive just written . But if you can make sense of my ramblings please feedback would be appreciated .
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banjo58
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Hi banjo58. I also get spasms, usually just my legs, I'm currently taking Amitriptyline and Co-Codemal, and it's working. I have ALD and Rheumatoid Arthritis. It might be worth trying the 2 meds together, as some people have said that Amitriptyline on its own didn't work.
Can I ask you a question please? The last couple of months, I get no real warning that I need the loo, it's almost instantly I need to open my bowels. It's never diarrhoea, but I still can't hold it in, and rush to the loo. Is this what you are experiencing, and have you seen your Dr about this? x
Hi there x I have tried the amitriptyline but couldn't take it x I also take dihydrocodeine regular and have even trulied oramorpg x all to no avail x
The bowel thing yep I've had colonoscopy and removal of polyps etc as they thought there may be a problem with them x but nope they're findings were negative x
I was always told I had Irritable bowel x but now it's awful I really cannot go out unless padded x I'm no tena lady I'm now a good twenty lol x. So I understand but as far I know it's called bowe urgency syndrome or something similar but goodness help me if I get The Big D x disastrous. I'm sorry ive not been much help to you x.
Hi Banjo58, sorry to hear that you've already tried Amitriptyline, and it was no help. Another is magnesium, I know that has helped some people. As for the incontinence, there's a Dr Marc Engelen, from Amsterdam, he has done a small trial, researching women with ALD, and a common pattern he saw, was bowel & bladder incontinence among them. Oh the joys of ALD lol x
Count me in. In my legs, stomach, sometimes fingers.
Gabapentin or Lyrica. They stop spasms. Guaranteed. Makes you feel stoned as well.
My doctor initially prescribed Valium.
Fatigue? Modafinil. That gets me up and about. My fatigue is of biblical proportions, but I still manage to work a 12 hour day. A miracle. I love Modafinil.
Urinary incontinence comes and goes with me. I am currently OK.
Like I've posted before, plenty of our symptoms can be treated.
Your meds will depend on where you live and which doctor you see.
I am also diagnosed with this & daily probiotics, Zantac which has less side effects then omeprozole and follow a gluten free diet which has has helped .
I've have the ALD gene, been diagnosed with reactive arthritis and irritable bowel.
I take trammadol & celebrx for pain . Much of the anti inflammatories give me severe gastritis. They gave me immunosuppressants diagnosing me with reactive arthritis . I ended up with lung nodules - an infection & 6 weeks off work recovering .
Sometimes take Diazepam for muscle spasams.
Tried Cymbalta for nerve pain although stopped due to anxiety attack side affect. sometimes I take Carbamazepine . I was told this gives less side effects then Gabepentin.
I try to go to gentle yoga, gentle water aerobics & walking regularly . I'm also going to counseling to build mindfulness skills in dealing with chronic disease & changed my work schedule. I work 4 days per week Takng Wednesday off mid week to rest.
My faith, church community ,friends & husband really help.
Stanford recommended Mitro tonic advanced mitrochondrial cocktail for fatigue. It is a powder you add to water & drink 8 oz. daily. It appears to be helping although hard to tell.
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